Alzheimer's patients forget, we should remember

By Deborah Simmons - The Washington Times - Thursday, June 16, 2016

ANALYSIS/OPINION:

It is like a thief in the night, an unwelcome visitor whose entrance robs you of people you love, people who love you and, eventually, steals their lives.

It is Alzheimer’s disease and it took my curious, talented dad.

It tried to take my mom, too, by wearing her down with Dad’s round-the-clock needs and her unselfish heart. Blessedly, we persuaded her that respite care was mandatory — and that wasn’t easy for a woman who had been married to the same man since she was a teenager.

We, her four children, saw that Daddy’s disease was bearing down on her as his primary caregiver.

Oftentimes, perhaps even most times, the family member living with or who is closest to the Alzheimer’s patient directs most of their energy and emotional resources toward that person.

A bit of advice here: People with Alzheimer’s do not merely have memory loss. Sure, they misplace their keys, repeat questions and forget the directions to walk themselves and the dog. They may even wander off, as children and Alzheimer’s patients often do if you allow them. Yet the thief known as Alzheimer’s does far more than invade their memory, leaving them to forget the names of people they’ve known much of their lives and how to do simple things like fry an egg.

Some Alzheimer’s patients become agitated and violent. Others become lethargic and uninterested in themselves. Still others do not remember how to read.

I strung bells around the knobs of every door in our home — if someone came in or went out, whether it was my dad or the kids, the bells gave notice.

Feeding schedules are as important for patients as they are for babies and small kids. In the late stages of Alzheimer’s, patients don’t know whether they are thirsty or hungry.

Also, my kids took it upon themselves to read to Granddaddy, the same as he did with them when they were small.

We contacted the Greater Washington Urban League for support, and support it did. They helped my parents sign up for Meals on Wheels, which brought food for Dad and Mom, both senior citizens, and the Urban League helped us a find a respite caregiver who handled my dad’s bathing and light housekeeping.

My mom was at first reluctant about the respite care but truly came to appreciate the daily four hours when she could do as she pleased, including just sitting on the front porch, knowing Daddy was taken care of. And she could watch her soap operas, and tennis and golf matches uninterrupted.

Respite care is a godsend.

For millions and millions of patients and caregivers, organizations such as the Alzheimer’s Association and Alzheimer’s Foundation of America are founts of information for the who, what, when, where, how and why questions about Alzheimer’s, which does not discriminate. It is a disease for which we have not yet — yet — found a cure.

A slowly progressive disease, Alzheimer’s is creeping into our homes more and more:

• Every 66 seconds an American develops the disease.

• Family caregivers spend at least $5,000 a year on an Alzheimer’s patient.

• In America, Alzheimer’s is the sixth leading cause of death.

• More than 5 million Americans are living with Alzheimer’s.

My dad lived with Alzheimer’s for more than six years, long enough for him to forget who he was, who we were and that he had spent most of his adult life as an artist, a student of history and a heraldist with the Department of Army designing medals and insignias for the armed forces, the president and government organizations. (He was a member of the team that designed the logo for the Environmental Protection Agency.)

The disease even robbed Nancy Reagan of her beloved Ronnie.

On Monday, June 20, the Alzheimer’s Association will again hold its fundraising and awareness event pegged to the summer solstice, which is “The Longest Day” of the year. Visit the organization’s website act.alz.org.

Alzheimer’s patients forget.

We should remember to act.

• Deborah Simmons can be reached at dsimmons@washingtontimes.com.

• Deborah Simmons can be reached at dsimmons@washingtontimes.com.